Hardest things I just discovered living with this xxxxx disease

[Carolina]

Thanks, Irish, for your post.

And for all of those Sjogren's Angels who are sharing their experience, strength and hope. 

I guess my Southern Girlfriends would say, "This is the time to put on your Big Girl Panties and take charge of your own life, Lou".

We have ways of coping, and I hope, Lou, that now that you have made your introduction and have shared with us,  you will also find ways of coping.

My mantra:  Patience, Persistence, and Acceptance are keys to living life with my Immune Disorder.

Hugs,  Elaine

[cccourt1942]

Lou:
     Your grief is understandable as you are young to face this situation--both medical and geographical.  One of my first symptoms occurred when I was 35 and living in a 3rd world country.  I did NOT have a diagnosis.   Ignorance is bliss:  that means-it is simpler to live without knowing something for sure or with a name.  For you, it's harder since you know what you are facing.
      I can't tell you what is best for you from where I am in life in age and stage of SjS.  I can say this:  stay on board this site.  You have received some great advice and have sympathetic ears here.  You will learn hints to becoming comfortable and managing your symptoms.  We want to help each other--even though you are perceiving a bit of hostility.  You will be served well in the end.
      Hoping you have a comfortable day..or more comfortable than yesterday, etc. 
    Sjoldier c3

[angeldancer]

Wow...that was wonderfully said Irish.

Lou...finding some joy in a world where there is a lot of pain can become difficult at times.  I know that I and many of us here have gone through the unimaginable.  Finding that one thing to keep us moving is the direction of keeping mental peace is hard but we must search.

Most times we will never find it in people.  The minute I tell someone that I have been in the hospital or in a lot of pain I don't hear a sound from people.  Some people thought I was dead already.  People try to get far remove from situations that are uncomfortable for them.  Finding your peace is finding the one thing that gives you the light at the end of the tunnel.

We can only hope and pray for you and give you support.  We can tell you that releasing the positive aura in yourself is really important to have positive endorphins released in your body.  We have hormones that hurt us and help us.  The joyful ones when we find some inner peace helps push us in the right direction. 

The first thing is you have to find a doctor that can get your symptoms under control.  I understand the stomach and colon thing because sjogrens had done a job on my system and I feel it is the reason why I got colorectal cancer.  I just got out of the hospital because my liver and pancreas inflamed and my bile duct is messed up.  They found another polyp which they removed.  Once I got out of some of the pain I could think and become positive again.  I know it's hard when the pain is too extreme to be positive but I kept telling myself to push through and it too shall pass.

Profanity never sends the right endorphins out.  Sometimes it may feel good to release that way for a moment but it is only for a moment and then those horrible hormones tell your body to hurt you some more.

Do you like parks or beaches or the sun and moon?  Do you like watching children play?  Do you have a certain music that calms your spirit?  Do massages help you to relax?  I ask these questions because in the midst of so much agony you have to find an outlet for peace.  We live in pain every day and it is very important to find the thing that helps us through it.

Lastly, a good friend that has tried to help me on my journey told me the other day that the doctor gave him 6 months to live.  No sjogrens but heart disease that he evidently has had since he was in his early 20's.  Now he is 50.  He told me he doesn't look the same but he still has life.  He asked me would I go on a road trip for him  to find whatever peace he is looking for.  I will take that trip with him soon.  His son is 13 or 14 and they are very close.  How do you prepare your kid for this outcome.  This is just to say that he is trying to find peace which I think we all are doing.

We are here for you and will give you suggestions that have helped us or other people.  I ask that you start finding that one thing....whatever it is...it will help you on this roller coaster of life.  For whatever strange reason I believe that I am in this condition to help other people.  To help restore joy to other people.  To help others see that life is what you make it no matter what the circumstances are.  And when I need to vent I have these wonderful people here to hear me out.

Peace and blessings
Angeldancer

[Carolina]

"Please, read more and use your brain for more things... We are adults and I for your information, I think not the users are so belivers and this [deleted] things.."

Lou, entiende usted que estas palabras en ingles son insultantes?

Usted escribe en ingles, y creo que usted debería escribir en español y usar uno de los sitios que traduce sus palabras al ingles.

Elaine

[angeldancer]

Thank you for making me work on my Spanish Elaine. 

[warmwaters]

Lou, when you're in the middle of something hard, it can be difficult to find the "bright side" of something.  But maybe tomorrow you can find something that makes you feel good, if only for a minute. Maybe it's kitten walking by, or some kids playing in the park, or that your breakfast was cooked just the way you like it. 


Take care

BTW, my name is warmwaters, because I always feel better if I can get in some warm water, whether it's the ocean, a bath, or a hot tub. That's one of my "bright things"

[CMNK12]

Hey Lou,
I'm sorry that you are going through the most difficult time in your life. I am going to tell you something I heard recently that I have been reflecting on. This statement...we do not control most of the circumstances in our lives,sickness,loss of loved ones,jobs, death of a child,ect....but we can choose how we respond to it / them. The circumstance that is.


So I never asked to be sick, neither did you. But what I can do is educate myself, be kind to myself, allow others to either accept it or not. Those who know me the best, they see what I have lost, who I am not any longer. The rest, I have nothing to prove to them anymore.


I can do all of these things also because I do have faith. That's the other thing that's the no no on here religion. But I am Christian and I am not ashamed.


Take care Lou and I will pray for you. CK